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Valerie Rogers - symptomatic
Onset of symptoms: age 15 Birthdate: 5/14/67 |
| Medications: Penicillamine | |
| How My Wilson's Disease was Discovered | |
| My Wilsons disease was discovered at Bostons Childrens Hospital after a week of tests. I did at the time have K-f rings visible to the naked eye. My parents became concerned with the syptoms they were seeing , and so did my pediatricion , who sent me to childrens. | |
| My Symptoms Before Treatment | |
| My diagnosis was made when I was 15. Looking back it seems if things started to go "wrong" 2 years prior to my diagnosis and at 15 just became worse. I had involuntary movements in my hands and my head would twitch. I had lost alot of my motor abilities, my balence was off, i could barely handwrite or even hold a pen, my speech was slurred and allmost illegible at times, i drooled. I did not know what was happeninig to me. I stopped talking allmost entirely i couldn't stand having to repeat myself. My mind was working ok I just could not get my thoughts out. I aslo had K-f rings. | |
| My Symptoms Now | |
| I am clumsy, I still have balence problems. I now also have some joint problems mainly in my hands and knees. When i am tired all my symptoms magnify it becomes hard to talk, my speech will slurr, and sometimes even becomes difficult walk. I do require a lot of rest. I am still bothered my "bad" handwritingI I try to type everyting if possible. Occasionaly I will have a twitch in my finger.
I do experience some side effects of the pennacillamine. My taste and smell have diminished a lot. I also can not tolerate more than 5 pills a day do to lesions that form on my elbows and bleed. One good side effect from the pennacillamine is that i can not smell skunk!
I have been unable to have children although I am not sure if this is directly related to WD. |
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| Additional Comments | |
| I recently took a positon at my company as a cheesehop manager. I enjoy my work. My husband and I enjoy time with our dog. We also love to travel and do it as often as we get the chance.
To anyone who has been recently diagnosed, don't be afraid to ask questions. Chances are one of us has been through something similar. Some days I am really upset that I have WD, however most days I think of how luckey I am and all the things I could have had. I think that educating doctors and people is our best chance for helping patients with WD. |
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| Contact Info | |
| Valerie Rogers (pinehurstt@aol.com) |
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